Diagnosed at age 35

Posted by aanm @aanm, Sep 23 7:16pm

Hi all

Diagnosed at age of 35 was put on metoprolol. But this year echo showed my Gradient was going up. Stress echo showed gradient goes up to 70s. We saw HOCM clinic Rochester NY . They recommended camzyos or myomectomy. I heard mixed things about the drug. Anyone knows what is the percentage of success of the drug , if it works how long you have to be on the medication?, what are the common side effects? What is incidence of heart failure which is a well known side effect . I am 40 now and have a small baby just very worried about the recent results and worried if the medication is going to work . I know surgery is the most definitive treatment but very scared to choose that route. Any feedback would help. Thanks in advance

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hocm2025 | @hocm2025 | Sep 23 10:20pm

Sorry to hear this. I see that you are being treated at a Center of Excellence, which is great. Find a doctor/expert that you trust and get a second opinion as necessary.

I am not a doctor and was never on Camzyos. From my research, medication is highly effective for many, neutral for others, and a negative for relatively few. It is likewise my understanding that it will not “cure” you; if it works for you it must be taken forever (or at least until something new comes along).

I had a myectomy a year ago at a COE and it achieved excellent results. At the time, I thought that if I had been 40 or 80 I would have tried the medication first — at 40 to postpone the surgery while still having time to do it while relatively young and strong if the medication proved to be ineffective, had bad side effects, or the protocol for obtaining it proved to be too onerous; at 80 to avoid the trauma of surgery—however, I was 63 and thought that if I would eventually need a myectomy one day, I’d rather go through that when I was as young and strong as I was ever going to be and have the benefit of that definitive treatment for as long as possible. I was fortunate to have had access to a highly experienced surgeon; if I hadn’t, I might have made a different decision. And I acknowledge that my rationalization might not be relevant to you or anyone else.

Wishing you all the best on this journey.

aanm | @aanm | Sep 24 2:55pm

Thank you for the feedback. I really appreciate that. Can you please let me know where your surgery was done and the surgeon name ? If you don’t mind ? . I would like to enquire about that route too.

carolinca | @carolinca | Sep 28 6:37am

I have had very good results taking Aficamten. Maybe you could ask about that drug. It was just approved last January I think. I usually have side effects to every drug but have had none with this one.

Wishing you all the best and enjoy that little one!

bilingual84 | @bilingual84 | Sep 29 7:06am

Hi @aanm and welcome!
I’ve had a similar experience as you - diagnosed 5 years ago (wrongly at first, but that’s another topic) at 37, now I’m 42 and have been on Camzyos for a year and 4 months now. I was terrified to start taking it, esp because of the sudden death thing (which I later learned is just something they have to put on the box). I had really bad shortness of breath before and horrible fatigue and a week after starting Camzyos that all went away. And after my cardiologist put me on a higher dose (from 5mg to 10mg) my life literally changed for the better. I could walk up stairs and walk long distances, sleep was better, no bloating after eating, …
Mavacamten (Camzyos) is something I will have to take for life and I’m ok with that if it works like it has been.
Stay positive and I promise you it will get better! And reach out, if you need to… Girlpower and all that 🙂

aanm | @aanm | Sep 29 12:20pm

Thank you so much for the feedback. Makes me feel better. Hope it will be the same in our case too.

whidbey | @whidbey | 6 days ago

I have found this blog so helpful personally that I try to answer people's questions whenever I feel my experience will help them. I was diagnosed with HCOM at age 58. I have now been on Camzyos 3 years and it has been a life changer for me. The side effects of "heart failure" has always been "scary" to hear, but I have had such success on this medicine that I must let you know my experience. I also have mitral valve regurgitation, so I am on Metoprolol for that as well. Since I have two heart anomalies, I really didn't want to have a surgery, so tried Camzyos first. Currently, I am a patient at MAYO in AZ, but previously I lived near Seattle and was treated at the University of Washington. At that time, I was told that Camzyos could potentially take the place of open heart surgery for my heart problems. I am thrilled to have this option. Blessings to you.

aanm | @aanm | 22 hours ago

Thank you so much for the feedback. I really appreciate you taking time to respond. Ye see are also planning to take camzyos. Just waiting to see if our insurance approves it or not.

brumasterj | @brumasterj | 2 hours ago

Great place to be right here! So many stories!
Read some of mine if you will!
Everyone is different and reacts to medication differently
I was 56 when diagnosed HCM and very active person! When i finally got diagnosed i was pretty sick from my exercised induced heart failures
Camzyos was a miracle drug in my opinion it got me stronger back out on my bike but had limitations on how hard i could ride.
I was on it for 5 months just to get stronger for surgery

Talk to your cardiologist team about all your concerns

Best of luck